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The Disease Chaser
June 2, 2010  |  by Michael Anft

(page 3 of 5)

The Anabaptist movement was formed in the early 16th century by Menno Simons, a lapsed Catholic priest whose followers—Mennonites—were named after him. The Amish splintered off a century later during a dispute over foot washing and “shunning,” the hard-and-fast excommunication of sinful members that the Amish still practice. Farmers who came to the colonies were drawn to Lancaster County by Penn and by soils suffused with limestone. Centuries of farming under harsh conditions—they had been granted the least desirable lands in Europe by noblemen—had taught them the value of “good earth.”

Farming is still the centerpiece of life for the 25,000 Amish in Lancaster County and a similar number of Mennonites, even if land pressures have forced many of the men into trades, such as carpentry. One can see tradition in action as men wearing black, wide-brimmed hats and sporting mustache-less beards drive five-horse teams and plows across meticulous fields. Other traditions endure. Hymns that were composed by Anabaptists who were persecuted and imprisoned in a Bavarian castle nearly 500 years ago are still sung during services held in Amish homes. The hymns commemorate the suffering of those who stood fast for their beliefs.

Suffering lives on through the genes as well. The “founder effect”—the name for a lack of genetic variation within a group—has been reinforced by the insular nature of the so-called Plain People of Lancaster County, who don’t proselytize to bring in new members who would deepen the gene pool. The founder effect has left their children vulnerable to dozens of inherited disorders, mostly due to recessive traits in genes. Twenty-five percent of children born to parents who both carry recessive genes for a disease are likely to manifest it, making the young of inbred groups particularly at risk for strange disorders. Family names show how rarely the gene pool in Lancaster County has been jumbled. Nearly one in four Amish people carry the surname Stoltzfus. Other surnames—Beiler, King, Lapp—predominate. Of the 200,000 Amish in the United States today, there are only 125 or so family names.

Today, physicians who treat Amish and Mennonite infants perform specific genetic tests to determine susceptibility to disease. Scientists have discovered, for example, that males with Joshua’s surname have very short Y chromosomes, and that cases of Ellis-van Creveld syndrome, an Amish-specific form of dwarfism, can be traced back to one couple that emigrated from Switzerland to Pennsylvania in 1767.

On Tuesdays, when Kelley works in Lancaster County, he’ll search for signs of Amish-specific disorders as he sees patients in their homes and at the clinic, a sturdy edifice raised in a single spring day in 1990. It sits on three non-arable acres in the middle of the region’s farm belt, and is accessible to horse-drawn buggies that can travel only 25 miles in a day from around various parts of Amish country. More than 1,700 children make their way there for treatment each year, whether by archaic means or by renting a taxi or driver. While most Amish sects and some Mennonite ones don’t permit car ownership, it’s OK for them to be driven somewhere by someone else.

That’s not the only wrinkle in Amish lives that an outsider might interpret as a contradiction. Their reliance on the “English” for modern medical care, despite their disdain for newfangled contrivances, is another. The Amish don’t train their own physicians. As a rule, children of the Plain People are schooled only until the eighth grade and are taught vocations—such as farming and homemaking—that keep them grounded and away from “prideful” accomplishments, including college degrees.

To remain separate from the world outside their communities, the Amish (and many Mennonites) believe in renouncing what they see as pride and undue power that emanate from modern knowledge. “To the Amishman, the grossest distortions of education are perpetuated by the scientists, who have invented the theory of evolution and who have made bombs to destroy the world,” wrote John Hostetler, a sociologist who was raised Amish before leaving the community and eventually authoring Amish Society (published by Johns Hopkins University Press and now in its fourth edition). Yet, there are no proscriptions in the Bible against seeking medical care. Hence, when they need it, the Amish seek it from those outside the community.

Kelley and the clinic’s other physicians are hardly pioneers among researchers in Lancaster County. Victor McKusick, Med ’46, a Hopkins researcher and physician who is widely known as the father of modern genetics, became entranced with the Amish in the 1960s after reading Hostetler’s work. Drawn by the closed nature of the Amish community and its well-kept records, McKusick began making regular trips to Lancaster County, examining people and investigating the effects of genes on them. In 1978, he published Medical Genetic Studies of the Amish (also published by JHU Press), still an important tome in its field, and identified dozens of genetic conditions including brain swelling, cataracts, and macular degeneration.

“I’ve always felt that McKusick’s work here contributed greatly to his reputation as a geneticist and to Hopkins’ role as a center for the study of it,” says Morton, the Clinic for Special Children’s chief founder, director, and driving force. By opening themselves up to an outsider decades ago, the Amish have helped science unravel facets of other diseases in the general population, such as Alzheimer’s and Parkinson’s.

“They do this even when they know that we can’t treat them, as is the case with dwarfism and Amish microcephaly,” a metabolic disorder that invariably ends in an infant’s death, says Kelley. “They know they can do someone else some good.”


4 Comments


  1. As someone who was raised in the PA Dutch culture of York County, PA (though not Mennonite or Amish), I have always had the admiration for these people and the way of life they choose. I am so impressed with these doctors and the THEIR choices to work and study primarily among these people. This article treats the whole issue with the kind of respect it deserves. Kudos!

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